Solace in the Midst of Childhood Hospitalizations

July 6, 2007— -- As a young physician-in-training, I cared for many children who spent extended periods of time in the hospital, frequently in very intensive situations.

Nikki, for example, was born at 28 weeks' gestation and experienced multiple complications from her prematurity.

To make matters worse, her mother abandoned her shortly after birth.

Nikki spent almost her entire first year of life in the hospital. The nurses became virtual mothers to her: She responded to them as her primary care takers, and they, in turn, had a mother bear's protective instinct to shield Nikki from unnecessary intrusions and procedures -- to shield Nikki from ignorant learners like me.

One nurse eventually adopted Nikki, yet despite the love and attention she received, Nikki endured behavioral and developmental harm that is likely irreparable simply from growing up in the hospital.

The hospital, as you can imagine, is a hard place in which to grow up.

In this week's issue of the Journal of the American Medical Association, Dr. Maryland Pao and colleagues from the National Institute of Mental Health summarize some of the challenges faced by children who spend a significant part of their childhoods in the hospital -- and ways that medical institutions might mitigate some of the detrimental effects.

Care Can Be Disruptive

In a certain respect, growing up in the hospital reflects the wonderful advances of medicine over the past century. Improved childhood survival from erstwhile lethal diseases has increased the number of children who have been saved from conditions ranging from cystic fibrosis to leukemia to congenital malformations.

This has also increased the number of children who experience multiple, prolonged and intensive hospitalizations.

Pao and colleagues cite that, in 2000, approximately 2 million children were hospitalized, accounting for 5 million hospital days each year.

Although essential for the medical care of these chronically ill children, prolonged hospital stays interrupt school, family life, physical and emotional development -- and even the brain chemistry of a child.

Questions arise: Should these vulnerable children be disciplined as other children for typical childhood misbehavior? If so, by whom? What are the roles of nurses versus family in the physical care of the child? How should the child continue school? How can the child enjoy significant aspects of growing up such as team sports, drama club or the prom?

As occurs with any family of a child with special needs, the child who experiences prolonged hospital stays disrupts normal family dynamics. Parents often view the child as particularly emotionally vulnerable (which to a certain extent is true), and may try to compensate by withholding normal discipline -- or by becoming overprotective.

Prolonged hospital stays interrupt normal developmental processes that would have occurred around the dinner table, on the soccer field or in the classroom. Disruptions of these normal developmental processes often results in a child not progressing in his or her emotional and social maturity. These disruptions may also interfere with the child developing a normal sense of self.

Invasive, painful procedures and separation from loved ones increase anxiety and can impede developing trust or the ability to bond to others.

Beyond the stress and pain involved with any hospitalization -- for adults as well as children -- chronically ill children have higher rates of depression and anxiety compared to their peers.

Up to one-half of children with severe asthma experience depression. Pediatric oncology patients also have high rates of psychiatric illness -- nearly 20 percent in some cases.

Some children even develop post-traumatic stress disorders from their hospital stays, underscoring the lifelong effects of excruciating hospitalizations.

How Hospitals Can Help

Despite the serious implications of multiple hospital admissions for children, there are interventions that can make hospital stays less distressing.

One of the major interventions seems to be the most obvious: recognition that a hospital stay for any length of time is a stressful experience for a child. Most hospitals and pediatric staff know this, yet "critical pathways" -- standard operating procedures -- may not be in place to ensure that stress is minimized every day and in every situation that the child encounters.

To the extent possible, the hospital should be an "ouchless" place, according to Pao and colleagues. At the very least, safe areas should be designed where absolutely no diagnostic or therapeutic procedures are performed -- playrooms, outdoor patios and video arcades are examples. Regular, predictable schedules are also important, and should be posted prominently in the room for the child, family and medical staff to see and strictly follow.

A multidisciplinary team, including physicians, nurses, occupational and physical therapists, teachers, spiritual ministers, pain and palliative care providers, as well as mental health professionals, should be involved in the care of any child who stays in the hospital for more than two weeks.

Behavioral therapy, such as biofeedback and guided imagery, can help allay anxiety and even control pain.

The Strength of a Child

Many, but obviously not all, children are exceptionally resilient and handle hospitalization well both in the short- and long-term. Much is individually determined. In the future, with improvements in psychiatric diagnosis, genetics and molecular biology, it may be possible to identify which children are particularly vulnerable to the stresses of hospitalization.

I have not had the chance to see Nikki since I cared for her 18 years ago, but I have had many pediatric patients since then who are chronically ill and have experienced multiple, prolonged hospital stays.

One child in particular stands out: Michael, diagnosed at age 13 with leukemia. Strong in his Christian faith, Michael was at peace even in the darkest moments of his care such as during life-threatening infections after his bone marrow transplant. His illness greatly disrupted his family's schedule, to say nothing of their lives. At one point, he was hospitalized 45 minutes from his home.

But his family responded to his illness in helpful and constructive ways. His extended church family rallied around him and his parents, providing emotional and physical support. Babysitting was one huge need for this family, as Michael had seven siblings. To the person, physicians, nurses and staff noted Michael's amazing capacity to bring calm to his own crisis situation. He blessed others by his presence.

He died at age 16, and although sad, his funeral nonetheless was a celebration of his life.

Not all situations are as uplifting as Michael's. Having personally gone through the arduous experience with patients and their families, it is clear to me that these events levy a steep toll.

With the lessons spelled out by Pao and colleagues, perhaps hospital staff members, physicians and nurses will become more attuned to the unique needs of this very vulnerable group of kids. And maybe all of us can reach out to those families that we might know who have a chronically ill child -- to visit, comfort and support.

Perhaps we can provide some measure of peace in the midst of their chaos and distress.

Dr. John Spangler is a professor of family medicine at Wake Forest University School of Medicine.